Update!

thelizardqueen

New member
Hey Guys, long time no chat!

Before you wonder, yes I'm still in hospital, but I'm aloud passes to "escape" the hospital. Following is an update on whats been going on:

Turns out that I don't have an active infection, but rather I have plugs. The plugs are causing my airways to tighten, etc, and my doc has told me due to this my lungs have over expanded. They've got me on IV Tobra and Cipro, and more then likely I'm in for 2-3 weeks. My doc is looking into home IVs for me, but there's a waiting list, so more then likely by the time its available, I'll be out of hospital already. The Cipro they've given me is pre-mixed with Dextrose, so my sugars have been super high since I've gone in, and its been such a battle to keep them down (I'm still working on it). I had to have 5 seperate IVs because my viens kept blowing daily - so I would get my three rounds of Cipro done, along with 2 rounds of Tobra (all in one day), and my viens would blow. After having 5 seperate IVs, they finally put in a PICC line. This was a first for me. They had to do two attempts on it, because the first time they tried, they couldn't thread the tubing through, but the 2nd time it went in. They put it too far in, and the tube kept pushing up against my heart, so they had to retract it a bit. Needless to say I have a nice sized purple and black bruise at the PICC line site.

I've pretty much my room all to myself. I shared with a guy for the first night, then he left, and then I didn't get a roommate until monday night. He's gone now too, so I again have the room all to myself with is super nice. Cory can stay as late as he wants. The foods horrible, which I'm sure you all know. The stupid dummy's there put me on a really redtricted diet for the first 3.5 days (2 carbs per meal), but they've finally fixed it so that I have a high cal diet and double portions, but Cory's still bringing me takeout.

The nurses and doctors are all so amazed at how clear my lungs are. They say it sounds like I don't have CF, but I keep telling them that its plugs that are causing my airways to decrease, hence why my PFTs were so low. Every morning since I went on the IVs my O2 has been 100%, up from my usual 97%. I've never seen it so high for so long. Its nice.

I've got day passes now, so that pretty much means that I only have to be in hospital for treatment times and physio. My schedule is Cipro at 8am, 4pm and midnight, followed by Tobra at 6am and 6pm. So I'm pretty much free and clear for most of the day and night. Todays my first pass, so I'm at home right now with Cory till about midnight, then I'm going back, he'll hang out with me for a bit and then go home.

Wow, so much to talk about, but I can't even think of it all. This is just the basics of stuff. I'll try to update a bit more, depending on how often I can make it home.

Gosh I miss all you guys. It hasn't even been a week, but it feels like forever though.

I'm starting to feel better though. The pain in my lungs is gone, my chest isn't so tight anymore, and I'm coughing up some of the plugs, so I'm getting there. The only thing thats dragging me down is the high blood sugars from the Cipro, but I'm working on it.

Anyways, like I've said this is a basic update, I'm in hospital for most likely the next week and a bit more, but will try to update as much as possible.

How's everyone doing?
 

Jane

Digital opinion leader
Glad to hear from you Liz. Hang in there!
Great news about your ox #s. Day passes are not something I'm familiar with but definately all for. The more time as you can spend out, the better.

I miss hearing form you. Hope you continue to improve.

Jane
 

anonymous

New member
Liz, glad you are doing well considering. One thing I wonder is why they keep you on Cipro IV as the pill form has been proved just as effective and has a high absorbtion rate as long as you don't take calcium supplements or antacids. Anyway, maybe some thing to ask about as it is much more friendly time wise.
 

thelizardqueen

New member
They had me on the oral cirpo, but did blood work, and found that I needed higher doses of it. Plus it goes straight into my blood stream, and I don't have to worry about digesting it. As it stands I'm doing 300ml of Tobra twice a day, and 800mls of Cipro three times a day I believe.
 

Tess

New member
Hey Liz,

It's good to hear that you are doing well. Passes are great aren't they.... Get better and get home quick..... About the Cipro couldn't they have Pharmacy mix it special in normal saline for you instead of the dextrose ??

Whe I was on it at home via IV they mixed it in both dextrose and Saline ..... worked the same in both .... just a thought.

I'll still keep you in my thoughts, Get Well and Get out of there soon
 

wanderlost

New member
glad to hear things are going reasonably well for you. Hopefully that PICC will run the rest of the time! Good luck and take care!
 

JazzysMom

New member
Glad to hear things are working up & out (the plugs I mean LOL). Enjoy your day passes. Just be sure to return! Thanks for the update!
 

thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tess</b></i>

About the Cipro couldn't they have Pharmacy mix it special in normal saline for you instead of the dextrose ??</end quote></div>

This was looked into, and the pharmacy gets the Cipro premixed with dextrose. They don't get any with just regular saline. They don't do any of the mixing, but get it premixed. Trust me, I looked into it.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

blindhearted

New member
Hey Liz! Glad you are feeling better. Hopefully those plugs will get cleared out. Glad you got a day pass, I had one once, it was for Senior Pics in school. Never able to get my hands on another one. They claim insurance dont like them to be handed out, I personally think they are afraid I will run and not come back <img src="i/expressions/face-icon-small-wink.gif" border="0">. Good luck on the high sugar, hopefully that will get straight soon. Continue to get better, get your rest and come home soon!
 

Allie

New member
Glad yto hear from you Liz! I can't wait till you get back to us full time! *HUG* <img src="i/expressions/heart.gif" border="0">
 

kayleesgrandma

New member
Glad you're getting taken care of kiddo--thanks for letting us know how you're doing. I'm getting to know you guys more and miss you when I don't see a recent post. Watch out for thosegowns--they're drafty!--Terri
 

littledebbie

New member
Yeah Liz! well I think yeah...sorry about the iv marathon, glad you got a picc. Glad they are fixing you up and supremely happy you have someone to bring you REAL food!!!!!! yeah Cory!!!!!!
 

NoExcuses

New member
What up girl.

In true twin fassion, my IV's blow after about 1-2 IV runs as well. So I'm not surprised that you had to get a PICC line. I'm just playing around of course, but really, I'm the same way.... PICC lines make IV's a little more tolerable for sure.

I am THRILLED to hear that you don't have an active infection. That must have made you feel really good. Mucus plugs are fun to cough up. That sounds weird, but for me, it's almost like popping a zit. Very very satisfying feeling when it's up and out!

So I hope those plugs keep coming up so that you can breath freer. There is no better feeling <img src="i/expressions/face-icon-small-smile.gif" border="0">

And that's inredible that your hospital gives you day passes. The two times I've been in, they didn't let me out due to Liability reasons. Of course I snuck out for food on occasion <img src="i/expressions/face-icon-small-smile.gif" border="0">

You are going to feel like a rock star when your'e done with your full course of therapy. I'm really happy to hear that things are going well.

FIGHT ON!!!!!!!!!!!!!
 

eli

New member
Hey Liz, glad to hear your feeling better. Also glad to hear they were only just mucus plugs and nothing nasty.

Hang in there.
 

LisaV

New member
Great news, Liz.
Here's looking forward to getting those nasty plugs up.
Anyone in the hospital really great at doing chest PT?
There was one woman at the hospital that my husband used to go to that could manage to loosen even the worst of his plugs.
We wanted to kidnap her and bring her home with us....
 

Ratatosk

Administrator
Staff member
Just out of curiousity -- would hypertonic saline and or pulmozyme help with the plug situation?
 

HairGirl

New member
Liz, good to hear from you, it hasn't been a week yet? Sure feels like it! Anyways, sorry about the IV stuff, they always have to poke me at least three times before they get a vein (even happened to AirMed!!!!) Hope these meds work! Don't understand the home health situation, too many people on it??? That's crazy. Glad to hear you're doing good and getting day passes!!!!!!!!!!!!!
 

Diane

New member
I'm glad to hear you are feeling better, but what surprised me was...............They put a GUY in your room???? Aside from the fact that you should always have a private room with no roommates, i cant imagine them putting a guy in a room with a girl....WOW i never heard of THAT before in a hospital. I learn something new each day i guess *shrugs*
 
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